Fathering Autism #20. Toe Thumbs & Crooked Pinkies. Hiding Behind Doors to Make a Stinky

[cucumber]

You said it so much better than me! Thank you for your posts! X
I was going to reply but didn't know how to explain, since I've tried lots of times on this forum to explain how behaviour is communication, but most people on here seem to be NT and suffer from a term I've coined; Neurotypical Bias.
#PleaseDontAblesplainStimmingToAutisticPeople lol!

Neurotypical Bias????
Come on...we are trying.
So not fair!

 

[Pink Marshmallow]

You said it so much better than me! Thank you for your posts! X
I was going to reply but didn't know how to explain, since I've tried lots of times on this forum to explain how behaviour is communication, but most people on here seem to be NT and suffer from a term I've coined; Neurotypical Bias.
#PleaseDontAblesplainStimmingToAutisticPeople lol!

Since @Hannah'sMama was responding to my post, are you saying that I'm "able-splaining stimming to autistic people"? I'm not saying this in a snarky way. I genuinely want to know. If I appear to have, as you call it "Neurotypical Bias".. wouldn't it be because I am NT and therefore that's the point of view I'm seeing things from? The way you've phrased it makes it seem as if us NT members cannot empathize or put ourselves in an autistic person's shoes whatsoever, not even in the littlest bit. Or that we think we're better than autistic people. Or that we know what we're talking about more than an autistic person does.
I'm pretty sure I can speak for many members here when I say that if I'm mistaken on something, if I've missed something, or am uninformed on something then by all means educate me and let me know.

I don't agree with throwing around the ableist term and now the neurotypical bias term and what that insinuates when it doesn't apply to most of the ppl posting here. It's also very divisive. Us Vs Them. If you're applying it to something Asa is doing or someone else in particular that's one thing. That would be applying it where it's appropriate. But to kind of lump all of us NT's into one group isn't any more fair than lumping all autistic or IDD people in one group.

 

[VickyIsAwesome]

It's just to try and get them to address the sender publicly or to develop a personal friendship with them. Alot of these fans just want a pat on the back from the FA gang. It's actually pretty gross.


It looks better without the so called miracle serum.

Yes i think it's pretty gross i wonder if they do chuck some stuff in the trash and seems like a waste of money from these fans

 

[Hotographer512]

Since @Hannah'sMama was responding to my post, are you saying that I'm "able-splaining stimming to autistic people"? I'm not saying this in a snarky way. I genuinely want to know. If I appear to have, as you call it "Neurotypical Bias".. wouldn't it be because I am NT and therefore that's the point of view I'm seeing things from? The way you've phrased it makes it seem as if us NT members cannot empathize or put ourselves in an autistic person's shoes whatsoever, not even in the littlest bit. Or that we think we're better than autistic people. Or that we know what we're talking about more than an autistic person does.
I'm pretty sure I can speak for many members here when I say that if I'm mistaken on something, if I've missed something, or am uninformed on something then by all means educate me and let me know.

I don't agree with throwing around the ableist term and now the neurotypical bias term and what that insinuates when it doesn't apply to most of the ppl posting here. It's also very divisive. Us Vs Them. If you're applying it to something Asa is doing or someone else in particular that's one thing. That would be applying it where it's appropriate. But to kind of lump all of us NT's into one group isn't any more fair than lumping all autistic or IDD people in one group.

Yup.
Labels are labels.
One side using them does not make it any more right than the other side using them.
If a group segregates themselves, uses trendy buzz words and only hears their own narrative, then the group looses credibility.
Just something to think about.
IMO

 

[Maidengirl]

Am I missing something!?
Why the AF would anyone send pepper spray!?

 

[Pink Marshmallow]

View attachment 121757
Am I missing something!?
Why the AF would anyone send pepper spray!?

Pepper spray?? Is it for them to use on ppl not obeying physical distancing?? WTF??
lol

 

[Stripe69]

Pet peeves for today
Able-splaining
Neurotypical bias
Cis women , which is the one that really gets me.
Ableist

 

[WoahThatsCrazy]

Since @Hannah'sMama was responding to my post, are you saying that I'm "able-splaining stimming to autistic people"? I'm not saying this in a snarky way. I genuinely want to know. If I appear to have, as you call it "Neurotypical Bias".. wouldn't it be because I am NT and therefore that's the point of view I'm seeing things from? The way you've phrased it makes it seem as if us NT members cannot empathize or put ourselves in an autistic person's shoes whatsoever, not even in the littlest bit. Or that we think we're better than autistic people. Or that we know what we're talking about more than an autistic person does.
I'm pretty sure I can speak for many members here when I say that if I'm mistaken on something, if I've missed something, or am uninformed on something then by all means educate me and let me know.

I don't agree with throwing around the ableist term and now the neurotypical bias term and what that insinuates when it doesn't apply to most of the ppl posting here. It's also very divisive. Us Vs Them. If you're applying it to something Asa is doing or someone else in particular that's one thing. That would be applying it where it's appropriate. But to kind of lump all of us NT's into one group isn't any more fair than lumping all autistic or IDD people in one group.

Well absoutlely not, I don't want to cause division or anything, etc x And your last sentence, yes, that's correct, but sadly, there are many ablest people out there in the word who love to make fun of disabled people and discriminate and not give out resources x
I'd have to refresh my memory, but I believe you said that people told Abbie 'hands waiting' while doing tasks so that she'd concentrate better? Please feel free to remind me, I don't want to be mistaken
But many adults who aren't autistic do speak over us - such as Assa! - and try to tell us why we do certain things. For instance, many years ago, people believed that autistic people didn't have any empathy. This is simply untrue as many autistic people, including me, will point out and demonstrate, particularly when we see people - especially vulnerable people like ourselves - in distress. Yet the lack of empathy theory damaged many autistic people for years, it would've made them targets for being isolated and bullied at school by teachers, students, etc, and made parents believe they need to "learn how to socialise appropriately" - which is also an ablest and arbitrary notion. Or the suppression of stims, or forcing eye contact. All of that was created with (what I call) Neurotypical Bias, because they only saw it from *their* point of view, not the autistic persons' - therefore showing a lack of theory of mind and empathy (haha, get it?!) Also another example could be thinking (many years ago, although some people might still hold this belief today, who knows ) that those with ADHD are just 'lazy' and 'annoying' and 'not applying themselves'. Uh, no, the feeling of not being able to concentrate and feeling like you're on a sugar high when you don't want to be would be worse, I imagine.

Again, another (potential) example of Neurotypical Bias, of not taking the time to listen to the real experts and learn to help the way those who do experience these challenges (caused by a challenging and overwhelming environment) say is helpful, such as using OT/PT/ST/communication devices to your advantage, and provide support and resources
But your reply was very helpful, and did remind me to take into consideration all of the kind NT's who are indeed listening to autistic people, donating to ASAN (NOT A$, supporting our preference of the neurodiversity symbol, etc etc. x


(In case people need reminding, Assa and Pissicilla don't do any of that, there are still hundreds of posts in FB autistic-led groups blasting this family for their horrific treatments of their daughter and their unwillingness to listen, and hundreds of comments blasting them for ignoring these such posts/comments). smh.

Pet peeves for today
Able-splaining
Neurotypical bias
Cis women , which is the one that really gets me.
Ableist

Able-splaining - meaning basically the same thing as mansplaining, but to disabled people, eg telling them they "just need to try harder" (they might need resources for that, Karen!) or telling wheelchair users they're faking it, or their pain isn't as bad, etc, or trying to tell a blind person what a cane is for etc etc.
NT bias, see above, but basically, telling an autistic person why they're dong things and what kinds of things they need help with or not, all often with the goal of "normalising" in mind, eg, not stimming, eye contact, playing with toys "socially appropriately" etc etc. You'd be amazed with what goes on. I'd suggest reading up on autistic writings such as NeuroClastic, Thinking Guide To Autism, etc )
Cis woman - why does that one get to you? That's making a distinction between trans woman and cic woman, since they may require different medical treatments, and society can still be incredibly transphobic at times, and denying transwomen/men care, equality, etc.
Ablest = discriminating against disabled people in any way shape or form. You'd be surprised at what happens/can happen.
Oh look, I've found something, Assa should be aware of *eye roll*
(Source: http://www.equalityni.org/ECNI/media/ECNI/Publications/Delivering Equality/UNCRPDOptionalProtocolPlainlanguage.pdf ) Edit to fix typos

 

[Pennylane8150]

Hmmm..

I know they haven’t register MaassSquad Cares as a 501c3 organization or any type of non-profit organization with Florida DOR..
When I searched for all business and organizations, nothing but Maass Media came up... Which surprised me that P didn’t have to register her LifeLime under but someone said she was probably just a 1099 contractor..
I wonder how an email or letter to them would do? Going to have to start some digging to see if I can get an address..

You’ll are completely correct though. If P is soliciting donations for an organization and that organization is not registered with the state, that is illegal. All non-profits are required to register and keep up records of all donations and expenditures...

I know a couple of years ago he gave out an email address on one of the vlogs and also P used to say to message her on Facebook if you had any questions regarding periods around special needs children. She regularly stated that they didn’t want to go into personal details on vlogs but she was happy to make contact with people privately.

 

[Pink Marshmallow]

To, @WoahThatsCrazy,

Well absoutlely not, I don't want to cause division or anything, etc x And your last sentence, yes, that's correct, but sadly, there are many ablest people out there in the word who love to make fun of disabled people and discriminate and not give out resources x

I agree that there are many people who do those things, but it seemed like you were directing this at the ppl who comment on here as if most of us are guilty of doing this. If you meant it in more of a broad or general sense, then I can understand that more.

I'd have to refresh my memory, but I believe you said that people told Abbie 'hands waiting' while doing tasks so that she'd concentrate better? Please feel free to remind me, I don't want to be mistaken

Yes, I mentioned the "hands-waiting" gesture. But I meant it as a way of getting her attention and letting her know that they'd like her to do something. I know that it can be used in the wrong way and in a more restrictive/controlling way and that it has the potential to be used abusively. My point was just that I don't think 'hands waiting' is a bad thing all together. If she's getting really worked up about something and it's escalating, hands waiting can be used to try to intervene. If an NT kid was having a really hard time with something, of course you want to find out why and to do what you can to help, but when the energy is building and building you might try something to stop it from becoming frantic and out of control. I don't mean this as a way to make things more convenient for the parent, but more so to help the person who is becoming overwhelmed.
These are just my thoughts on it. I don't claim to be an expert.

I agree that there are still many misconceptions and misunderstandings that NT people have when it comes to autism and other conditions and I agree that people should be called out on it if it necessary. My point is that there are some of us NT people who are genuinely trying to understand and who are open to being educated and it's a bit confusing and frustrating to just be lumped in with the neurotypical bias/ablest people.

Some ppl feel that Abbie is as far as she's going to get and that there's nothing going on upstairs. While I don't think Abbie is greatly more intelligent, aware etc than what we see, I do think she is still capable of more. That she isn't a total lost cause that shouldn't even be bothered with. I think there's a lot more she can do - but it would require her parents to put in a lot more time, effort, and consistency for her to make that progress.

 

[RocketQueen]

Well absoutlely not, I don't want to cause division or anything, etc x And your last sentence, yes, that's correct, but sadly, there are many ablest people out there in the word who love to make fun of disabled people and discriminate and not give out resources x
I'd have to refresh my memory, but I believe you said that people told Abbie 'hands waiting' while doing tasks so that she'd concentrate better? Please feel free to remind me, I don't want to be mistaken
But many adults who aren't autistic do speak over us - such as Assa! - and try to tell us why we do certain things. For instance, many years ago, people believed that autistic people didn't have any empathy. This is simply untrue as many autistic people, including me, will point out and demonstrate, particularly when we see people - especially vulnerable people like ourselves - in distress. Yet the lack of empathy theory damaged many autistic people for years, it would've made them targets for being isolated and bullied at school by teachers, students, etc, and made parents believe they need to "learn how to socialise appropriately" - which is also an ablest and arbitrary notion. Or the suppression of stims, or forcing eye contact. All of that was created with (what I call) Neurotypical Bias, because they only saw it from *their* point of view, not the autistic persons' - therefore showing a lack of theory of mind and empathy (haha, get it?!) Also another example could be thinking (many years ago, although some people might still hold this belief today, who knows ) that those with ADHD are just 'lazy' and 'annoying' and 'not applying themselves'. Uh, no, the feeling of not being able to concentrate and feeling like you're on a sugar high when you don't want to be would be worse, I imagine.

Again, another (potential) example of Neurotypical Bias, of not taking the time to listen to the real experts and learn to help the way those who do experience these challenges (caused by a challenging and overwhelming environment) say is helpful, such as using OT/PT/ST/communication devices to your advantage, and provide support and resources
But your reply was very helpful, and did remind me to take into consideration all of the kind NT's who are indeed listening to autistic people, donating to ASAN (NOT A$, supporting our preference of the neurodiversity symbol, etc etc. x


(In case people need reminding, Assa and Pissicilla don't do any of that, there are still hundreds of posts in FB autistic-led groups blasting this family for their horrific treatments of their daughter and their unwillingness to listen, and hundreds of comments blasting them for ignoring these such posts/comments). smh.

I find it very interesting that you brought up ADHD. Quite some time ago I explained my history of ADHD to another member. I had ABA and CBT for years. My behavior was as bad as one could imagine before therapy and medication, I was even removed from school at one point. And this was in the 70's when the term ADHD wasnt even used yet. It was diagnosed simply Hyperactivity Disorder. I expressed gratitude toward my mother, psychologist and therapists for teaching me, and becoming who I am today. You immediately replied and said you were "tired" of hearing people say they "think" they have ADHD when they do not, and then tried to say I never had ABA because if I had I wouldn't support it. You literally changed my own life story to fit your beliefs, then began to hurl around the ableist term and told me to get on Facebook to "educate myself."
You bring up Carly frequently, who herself has admitted to wishing she could be "fixed". You said "I blame that on internalized ableism." Again, not up to you to edit someones experience and feelings to fit your beliefs. One of our members here spoke beautifully about how ABA had helped her children, that was dismissed with "Carly doesnt approve of ABA." Ironic, since Carly didnt teach herself to communicate and understand language. ABA did that. A few weeks ago I also brought up the fact that you seem to like to come here to call us ableists, and frankly it appears as if you'd rather have autistic people just stimming alone in a room all day, eating rocks, or eloping into traffic than try to be "normal". And normal doesnt mean "looking people in the eye", it means being able to care for ones self properly, not being allowed to harm oneself in the name of stimming, and to communicate effectively in any manner. If you dont want that, you must be an ableist too.

 

[Appalled watcher from Eng]

My reckoning on the Tonia /Amanda situation is that one is P and the other S. They write in an infantile manner with deliberate spelling and grammatical errors to put us off their scent.

My reckoning on the Tonia /Amanda situation is that one is P and the other S. They write in an infantile manner with deliberate spelling and grammatical errors to put us off their scent.

Also, thinking about it, they only write defensive comments thinking it is less obvious than just deleting negative comments

 

[pinklady11]

I would feel bad for Priscilla if I thought she was basically a good person, but I don't. I think she's one of those adult women that has a serious case of 'Princess Syndrome' and people like that always get on my tits. She seems to be a pathological liar and something just gets my back up regarding her relationship with Abbie. I know a lot of people feel there's something inappropriate about Abbie's relationship with Asa and/or Isaiah and I respect your opinion, even though I don't agree with it. But I really feel there's something up with how Priscilla feels about/treats Abbie. As others have mentioned, I think P is extremely jealous that A's first daughter is NT. She admits herself that she doesn't have a mothering instinct - which, wow. Isaiah must feel awesome that you admitted that on a public forum! And there's just something else that's setting me on edge. Not saying any abuse is going on, but if Abbie was my student I'd be paying very close attention to the family dynamics.

yes the first thing i thought besides abby was the son..maybe that's why he went off on P and the house guest on one of the blogs..

 

[Appalled watcher from Eng]

Poor Isaiah. When is he off to college. Is where he is going considered to be a top notch university?

 

[Pink Marshmallow]

Poor Isaiah. When is he off to college. Is where he is going considered to be a top notch university?

I just did a quick search on 'the googles' and from what I saw, Appalachian State isn't even in the top 30 best universities in the US.

 

[Appalled watcher from Eng]

I just did a quick search on 'the googles' and from what I saw, Appalachian State isn't even in the top 30 best universities in the US.

Thank you. Well, he's not as clever as we were led to believe. How far is it from them?

 

[Baymaus]

And normal doesnt mean "looking people in the eye", it means being able to care for ones self properly, not being allowed to harm oneself in the name of stimming, and to communicate effectively in any manner. If you dont want that, you must be an ableist too.

I'm in the position of advocating for my brother after he nearly got himself arrested. The above paragraph expresses where I stand on the need for my brother to conform to that he can live somewhat independently
In April, he was stimming when he yelled so loud and punched the walls in his home so hard that the neighbors called the police. He hurt his hand and if the police officers who arrived hadn't been alerted by the neighbors that my brother is autistic and hadn't also understood that helping would be better than arresting, my brother would have wound up in jail.

I don't want my brother to live within the tight confines of assisted living. I also will not allow him to live here. Too many years of being his punching bag and my own need to feel safe at home. The option left is for him to help care for himself, not to harm himself and not disrupt the neighborhood he lives in.
He feels that since he is autistic he has the right to behave how he chooses. That he shouldn't be pushed to clean his own home or take care of his own personal hygiene. Or be harrassed about his lashing out and hitting people or breaking things. It reminds him of being pushed to do things as a child.

I wish he had had an easier life. I also know that the world is not going to conform to him. Just because he is autistic and struggles does not make me super human. I can't cope with his anger and his saying that he was fine until I was born if he is living in my home. I have the right to live the rest of my life not covered in bruises and terrified he'll hurt my dogs and cats to get my behavior "in line." If it makes me ableist and NT biased to insist on that I can live with that. I'm a separate entity from him and I get to have the life I built for myself after coming out of that chaos as a young woman stay safe and intact. I matter, too.

 

[Pink Marshmallow]

Thank you. Well, he's not as clever as we were led to believe. How far is it from them?

I can't recall the reason he chose App state. Unless they specialize in the field he's interested in getting into? Someone else probably remembers this better than I do. lol
It's about a 6-8 hr drive from Jacksonville, Fla.

 

[Krishascooties]

She’s annoying....

The only difference I see is the extreme white make up covering black circles in the glasses picture. Is that the look Piggy is going for, or am I missing something?!?

It looks like she smeared some foundation type makeup under her eyes. Is that what the makeup is, or is it a lotion meant to reduce the dark circles?
[/QUOTE]
I thought the same thing. I had makeup this color when I was a ghoul for Halloween I'm being very serious. It looks ridiculous and I can't imagine people want to buy stuff that makes them look like they have Halloween makeup on their face?!?

 

[Hannah'sMama]

I'm in the position of advocating for my brother after he nearly got himself arrested. The above paragraph expresses where I stand on the need for my brother to conform to that he can live somewhat independently
In April, he was stimming when he yelled so loud and punched the walls in his home so hard that the neighbors called the police. He hurt his hand and if the police officers who arrived hadn't been alerted by the neighbors that my brother is autistic and hadn't also understood that helping would be better than arresting, my brother would have wound up in jail.

I don't want my brother to live within the tight confines of assisted living. I also will not allow him to live here. Too many years of being his punching bag and my own need to feel safe at home. The option left is for him to help care for himself, not to harm himself and not disrupt the neighborhood he lives in.
He feels that since he is autistic he has the right to behave how he chooses. That he shouldn't be pushed to clean his own home or take care of his own personal hygiene. Or be harrassed about his lashing out and hitting people or breaking things. It reminds him of being pushed to do things as a child.

I wish he had had an easier life. I also know that the world is not going to conform to him. Just because he is autistic and struggles does not make me super human. I can't cope with his anger and his saying that he was fine until I was born if he is living in my home. I have the right to live the rest of my life not covered in bruises and terrified he'll hurt my dogs and cats to get my behavior "in line." If it makes me ableist and NT biased to insist on that I can live with that. I'm a separate entity from him and I get to have the life I built for myself after coming out of that chaos as a young woman stay safe and intact. I matter, too.

Absolutely, you matter! I'm very protective of siblings of individuals with special needs - be they physical and/or mental. They're often put into the role of caregiver or little adult (like Isaiah and yourself, I believe). You guys didn't sign up for this and shouldn't be expected to suffer or put your lives on hold for the sake of your sibling. You have spoken of your brother before and I truly believe you are doing the best for him that you possibly can. Using ND as an excuse for harmful behavior just isn't valid. It might explain it sure, but it's not a get out of jail free card. For example, if I snap at someone when I'm hypo-manic, fair enough it was caused by my illness. But it doesn't excuse my behavior - I hurt someone and if I'm a good person, I need to seek atonement and try to make sure that this doesn't happen again.

I sense you carry a lot of guilt surrounding your brother and I'm sorry you have to deal with that. I won't say something meaningless like 'you shouldn't feel guilty!' because that doesn't really help (at least it doesn't with me). Just know that while your guilt is perfectly understandable (a lot of people in your position feel this way), it's definitely misplaced. I think that from what you've said in the past that your parents could have made better decisions regarding you and your brother; and sometimes we feel guilt on behalf of others that should have known better. Does that make sense? This is deep stuff, sometimes it can be hard to express in words (at least for me). Long story short, you're actively trying to make things better for your brother and that's way more than a lot of siblings would be willing to do.

To, @WoahThatsCrazy,

Well absoutlely not, I don't want to cause division or anything, etc x And your last sentence, yes, that's correct, but sadly, there are many ablest people out there in the word who love to make fun of disabled people and discriminate and not give out resources x

I agree that there are many people who do those things, but it seemed like you were directing this at the ppl who comment on here as if most of us are guilty of doing this. If you meant it in more of a broad or general sense, then I can understand that more.

I'd have to refresh my memory, but I believe you said that people told Abbie 'hands waiting' while doing tasks so that she'd concentrate better? Please feel free to remind me, I don't want to be mistaken

Yes, I mentioned the "hands-waiting" gesture. But I meant it as a way of getting her attention and letting her know that they'd like her to do something. I know that it can be used in the wrong way and in a more restrictive/controlling way and that it has the potential to be used abusively. My point was just that I don't think 'hands waiting' is a bad thing all together. If she's getting really worked up about something and it's escalating, hands waiting can be used to try to intervene. If an NT kid was having a really hard time with something, of course you want to find out why and to do what you can to help, but when the energy is building and building you might try something to stop it from becoming frantic and out of control. I don't mean this as a way to make things more convenient for the parent, but more so to help the person who is becoming overwhelmed.
These are just my thoughts on it. I don't claim to be an expert.

The problem with 'hands-waiting' (imo) is that it's kind of a blanket way of trying to gain attention, conformity, etc. I would rather see something that is tailored to the individual and allows them to self-soothe in a more helpful way. Just as an example, I was told to use my 'sweet voice' as a child when my volume would start to creep up. As a result, I still tend to revert into a Priscilla like voice (I know, it's horrible) when I'm excited, stressed, or emotional in another way. What my caregivers should have done is something like take me outside to have a big yell, take a deep breath, gently ask me to assign a volume level to myself and to 'turn it down' to whatever is appropriate to a situation, etc.

In other words, if 'hands-waiting' works for someone without causing distress, I think it's perfectly fine. But if it seems to cause even more tension (as I feel it does with Abbie, YMMV), then other methods should be explored.